Imagine living with an illness so rare that science doesn’t even know how to explain
it, let alone cure it.
And sometimes, suffering in isolation forces you to do risky things just to stay alive.
That’s the struggle that some people on our list face every single day.
Here are 9 People With Extremely Rare Conditions!
What’s up, fact-natics!
This is Discovery Amuse, serving up your daily dose of the most outrageous, outlandish, and
out-of-this-world fun facts!
Keep watching til number one to learn of the incredible story of the man who literally
sees the world upside down.
Stephen: While there is life, there is hope.
#9: Sleeping Beauty
Sharik Tovar from Colombia has been cursed with a disorder that ‘til now, you might
have only seen from a Disney movie.
She was diagnosed with Kleine-Levin Syndrome, an extremely rare neurological disease that
makes her sleep for a REALLY long time….
As in up to 2 months long.
Woman: It was a huge shock, because suddenly one day, she just didn’t wake up.
I didn’t know what to do.
When Sharik was 2 years old, she had sleeping problems, so doctors prescribed her some sedative
pills.
It worked for some time, but her family’s nightmare started when Sharik turned 9 and
had her first long sleeping episode -- which lasted 17 days.
Sharik: When I’m sleeping, she gives me a bath, changes my clothes, changes my nappies
and feeds me.
According to her mother, her longest slumber so far is a record 70 days straight, and poor
Sharik suffers from depression as a result of her rare illness.
To this day, there is still no definitive treatment for Kleine-Levin Syndrome.
Watch until the end because his is definitely an inspiring story for the ages.
#8: Rapid Aging
The plot of the 2008 film “The Curious Case of Benjamin Button” centers around a man
with a condition that reverses time for him and makes him grow “younger” instead of
older.
Woman: Benjamin, we’re meant to lose the people we love.
How else would we know how important they are to us?
However, these two brothers from India are suffering from a disease quite the opposite
of it, because their aging process is completely sped up.
At 15 and 10 years old, Laxman and Ramesh Jadhav have already lost their teeth, have
deformed bones, thin hair, and fragile, translucent skin.
They also suffer from typical geriatric conditions like high cholesterol, high blood pressure
and arthritis.
Woman: Everyone wanted to know why this happened to us.
Were they born during th eclipse?
Their condition was initially suspected to be Progeria, which causes premature aging.
But after medical examinations, the gene mutation attributed to Progeria was not found in both
of them.
Dr. Jain: This is not a kid’s heart.
It’s more on the elderly side.
Doctor: The basic thing is that there is accelerated aging.
So the changes that will happen in a 60-year old or a 70-year old, are already happening.
In 2017, their DNA test results were sent to Germany for further analysis.
No diagnosis has yet been made.
#7.
Feeling No Pain
At 6 months old, Ashlyn Blocker had to undergo a painful eye surgery.
But much to her parents and the doctor’s surprise, little Ashlyn didn’t cry in pain.
That’s when they realized something must be seriously wrong with the little kid.
She can’t feel any pain.
And if you think that’s a good thing, think again.
Mom: It was scary because there weren’t many good outcomes involved in this condition.
People passing away from appendicitis because they didn’t have the warning signs, and
bone infections.
Ashlyn does not feel pain or temperatures due to her disorder called Congenital Insensitivity
to Pain with Anhidrosis or CIPA.
As a baby, she chewed off part of her tongue when her teeth grew out but felt nothing,
and even once fished out a spoon from boiling water with her bare hands.
Ashlyn: I wasn’t even thinking at all, it happened so quickly when I put my hand in
there until I brought the utensil out.
There is still no cure for CIPA, but if there’s a silver lining in all this, it’s that researchers
are studying Ashlyn’s condition and her brain’s reactions to certain pressures,
in the hopes of unlocking a possible treatment for those who do suffer from chronic pain.
Doctor: In the right settings, for example in emergency rooms or during acute injuries,
to avoid the incapacitation that can occur with often severe acute pains.
#6.
Germany’s Thirstiest Man
Marc: This is a lot of water to others but to me, it’s only the water for 1 month.
If you’re wondering my Marc Wübbenhorst (WOO-ben-horst) from Bielefeld, Germany stores
this much water in his garage, that’s because his body is eternally thirsty.
Marc was diagnosed with nephrogenic diabetes insipidus, which he inherited from his mother
and caused his kidneys to discharge fluids nearly as fast as he drinks them.
In order to avoid dying from dehydration, at times he must drink 20 liters of water
per day – ten times more than what the average person drinks.
When sleeping, Marc needs to wake up every 2 hours to rehydrate.
Otherwise, he will suffer from extreme dehydration, get a fever and lose concentration.
Marc: I suffer mostly from fever dreams because in the middle of the night, I have to take
up and I’m so thirsty in the night, and so sometimes I’m very, very cold.
However, drinking large amounts of water can also be life-threatening.
Marc is at constant risk of hyponatremia or water intoxication.
When water intake exceeds the kidneys’ water discharge, sodium levels in the blood may
plummet, which could possibly be fatal.
#5: World’s Thinnest Woman
Lizzie: At such a young age, I was forced to be in a situation of, I can either choose
to be happy, or I could choose to give up.
Luckily, I chose to be happy.
Despite having a diet that’s composed of burgers, fries, cake, and all other junk food
you can imagine, Lizzie Velasquez is still extremely thin.
She consumes three times more calories than an average person would per day, and has to
eat every 20 minutes to sustain her energy, and yet she’s practically skin and bones
due to a yet-to-be-determined condition.
Doctor: This is one of the few people who are known to have this condition.
They have very little muscle mass, their limbs look very thin.
When she was born, Lizzie only weighed 2 pounds and could perfectly fit inside a small shoebox.
Lizzie is also suffering from a blind right eye and a left eye with restricted vision.
But her rare condition didn’t stop this firecracker from spreading inspiration and
positivity to her more than 800,000 subs on YouTube.
Lizzie: If you’re ever feeling alone and need someone to listen to you, there is help
there, there’s help out there waiting for you.
#4: The Treeman
Abul Bajandar from Bangladesh made international headlines back in 2016 when he underwent multiple
surgeries to take out the tree-like lesions that grew on his hands and feet.
He was diagnosed with an extremely rare, hereditary skin disorder called epidermodysplasia verruciformis
or the “Treeman Syndrome.”
The series of surgeries successfully allowed Abul to live a relatively normal life in 2017,
when he could eat and write with his own hands.
But two years later, his symptoms returned and worsened, with inch-long warts growing
back on his hands and feet and spreading to other parts of his body.
Abul Bajandar: I already had 24 surgeries on my hand.
It’s quite scary that it’s growing back again, and I have to go through more surgeries.
It’s intimidating…
I’ve been staying here almost two years now, receiving the treatment.
In 2019, Abul returned to his hospital, with doctors saying that his relapse would require
more treatment.
#3: The Real Rain Man
In the critically-acclaimed 1988 movie Rain Man, Dustin Hoffman plays Raymond babbitt,
a man in the autism spectrum who also has “savant syndrome” or significant mental
abilities.
But what you might not know is that Dustin Hoffman’s role was inspired by an actual
person named Kim Peek, a “megasavant” who has amazingly photographic memory.
Man: Every time he read something and finished, he turns upside down.
So all around the living room would be turned around books, maybe 20 or 30 of them in a
day.
Kim was born with an enormous head, which was caused by his macrocephaly.
His brain abnormality resulted in developmental disability, but it also gave him an exceptional
memory.
Since he started reading, he has memorized up to 12,000 books.
He absorbs general information like a sponge, and can easily do calendar calculations and
identify which day of the week a specific date falls – along with any special events
celebrated on that day.
man: if Winston Churchill were alive today, how odl would he be?
Kim: 130 Man: And what day of the week would his birthday
fall in?
Kim: it would be on a Tuesday.
Sadly, the real-life rain man passed away in 2009 from a heart attack.
He was 58.
#2: Allergic to the Sun
French twins Vincent and Thomas Seris normally walk around the streets in these special “spacesuits,”
not because they are cosplayers, but because they need it for survival.
Vincent: Protecting yourself isn’t really a choice, it’s necessary.
See, the Seris brothers are both allergic to the sun due to their genetic condition
called xeroderma pigmentosum, or XP for short.
And getting exposed to sunlight or ultraviolet light even for just a short while could cause
3rd degree burns, which may lead to skin cancer.
Vincent: We’ve developed small cancers.
For example, I had one here on my lip.
We had others on our arms and face, which we had to get rid of.
The suits were manufactured by NASA and were specially developed for the brothers.
They also had to make adjustments at home to protect themselves, and avoid going out
during daytime if they can help it, earning them the nickname “Twins of the Night.”
Vincent: On all of the windows in the apartment, we have put these filters on and taped them
up.
And that keeps us protected.
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#1: Man with Inverted Head
Claudio Vieira de Oliveria from Brazil is a man who sees the world from a different
perspective, literally speaking.
That’s because his head is virtually upside-down.
Claudio: No one has ever been able to explain the reason why I was born with this disability
Claudio was born with arthrogryposis, which causes body joints to fuse together.
His arms and legs are twisted in awkward positions, and his head is facing the wrong way… and
what’s worse is that it’s upside down.
When he was born, doctors were so horrified that they told his mother to starve him to
death.
Thankfully, she didn’t.
Claudio: When I was born, it was a big surprise to have this body that was totally different,
the doctors didn’t give me 24 ours to live.
But Claudio refused to let his illness define him.
He learned how to use his mouth for writing and operating gadgets like phones and a computer
mouse.
And today, he’s become a motivational speaker, touching other people’s lives by giving
inspirational speeches at various events worldwide.
He also published his first book, entitled “The World is the Wrong Way Around.”
Claudio: I’ve got the whole world to conquer, all I need is to be conscious of my potential
and believe I was born without limits.
So, which of these incredible individuals inspired you the most?
Let us know in the comments section below!
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Wanna know more people with bizarre eccentricities?
Then don’t miss our ranking of the 9 People With the Strangest Addictions.
‘Til then, take good care of your health, fact-natics!
And see you in the next video!